Fighting for Treatment, Fighting for Life:
Eating Disorders and Access to Care
House Briefing- September 2000
Featured speakers:
Jeanine C. Cogan, Ph.D., Executive Director, Eating Disorders Coalition
Ruth Striegel-Moore, Ph.D., Professor of Psychology, Wesleyan University
David Herzog, M.D., Founder and Director, Harvard Eating Disorders Center
Patricia Santucci, M.D., Associate Clinical Professor of Psychiatry, Loyola Strich School of Medicine
Susan Peltzman, Mother
Donna Thompson, Person Suffering from Anorexia
Congressional Hosts:
Rep. Louise Slaughter
Sen. Harry Reid
Speeches:
Jeanine Cogan, Eating Disorders Coalition Executive Director
My name is Jeanine Cogan and I am the Executive Director of the Eating Disorders Coalition for Research, Policy & Action.
We are a new non-profit organization that was incorporated of April this year. Let me take a moment to tell you about us and how we came to be. For years, many people concerned about eating disorders have acknowledged the need for organizations to join together to garner federal support for the ever threatening problem of eating disorders in the U.S.
Historically and currently the federal government has paid minimal attention to and provided few resources for education and research on eating disorders.
In direct response to these calls for collaboration and action five of the leading eating disorders organizations have come together to create a new education and policy based non-profit organization: the Eating Disorders Coalition for Research, Policy, & Action (the Eating Disorders Coalition).
Our Mission: To promote, at the federal level:
- Further investment in the healthy development of children and all at risk for eating disorders
- Recognition of eating disorders as a public health priority
- Commitment to effective prevention and evidence based and accessible treatment of these disorders.
We are thrilled that two of our board members are here on the panel today and that representatives from all five of our organizations are present.
We are here today to address one of the Coalition's main concerns and to urge Congress to respond to this concern. That is the difficulty patients and families have in accessing care for eating disorders. Millions of people are suffering from the consequences of living with an eating disorder across the country. Of those, some will eventually die. In fact, anorexia has one of the highest mortality rates of all mental disorders. As will be outlined by the speakers on this panel - part of the reason these deaths occur is because eating disorders are widely misunderstood, are not taken seriously, go undetected and untreated, and receive inadequate coverage by health insurance companies.
So welcome to Fighting for treatment, fight for life!
Before I introduce the panel of speakers I would like to thank our Congressional hosts for the briefing. First we have Senator Harry Reid who has been interested in eating disorders for years now and sucessfully passed a resolution in 1997 designating May 6, 1998, as "National Eating Disorders Awareness Day" to heighten awareness and stress prevention of eating disorders. We are thrilled to have him as a leader in this fight.
I also would like to thank our Congressional host Representative Louise Slaughter who has been a key player in women's health for many years and has also distinguished herself as a champion of eating disorders in the House. She introduced the Eating Disorders Information and Education Act of 1997 and worked closely with people on the appropriations committee to push for report language on eating disorders. While Representative Slaughter was unable to make it today, her staffer who is a joy to work with is here with us today and would like to welcome you as well.
Not Simply a Passing Phase: The Dangers of Eating Disorders
David Herzog, M.D., Founder and Director, Harvard Eating Disorders Center
- Prevalence of anorexia nervosa (AN) and bulimia nervosa (BN) in adolescent female population of this country is approximately .5% for AN, and 2% for BN (Males represent only 5-10% of eating disordered individuals)
- Approximately 10-25% of teenage women have substantially disordered eating or body image disturbance Eating disorders can result in severe medical problems including cardiac arrhythmia, osteoporosis, and obstetric complications
- Bone density improves partially with recovery; patients with AN demonstrate significant residual bone loss post-recovery; 1/3 of women with adolescent-onset AN demonstrate bone density more than 2 S.D. below normal even after recovery
- Long-term outcome for eating disorders, 50% of ANs and 52% of BNs fully recover, and 30% of ANs and 39% of BNs improve, while 20% of ANs and 9% of BNs remain chronically ill
- Mortality: 5.6% per decade for AN
- AN and BN are often chronic illnesses; BN outcome more favorable; severe medical complications; extremely elevated mortality and suicide rates
Reference: Becker, A.E., Grinspoon, S.K., Klibanski, A., & Herzog, D.B. (1999) Eating Disorders. The New England Journal of Medicine. 340:1092-1098.
The High Price of Treatment: A Parent's Story
Susan Peltzman, Mother
Thank you for allowing me to share some very personal experiences with you. I am the parent of an eating disordered child. My 17 year old daughter Melissa has been suffering with anorexia and bulimia for more than 5 years. Though this disorders hers, the suffering is shared by all who lover her. We have an added struggle, more like a nightmare, trying to get the proper treatment for her. My family is fortunate in the respect that we have been able to afford treatment for Melissa, but that is not to say it hasn't been an enormous burden. Yes, we have health care. Yes, like most others, we pay an enormous amount of money for this insurance.
The reason I'm standing here before you today and not someone else is because Aim a fighter. I have fought my insurance company. I have questioned them, have submitted and resubmitted claims, have written letter and have had my child's therapists do the same. But, no matter how hard I fight, its almost always a losing battle.
Living and dealing with an eating disorder in a loved one is all consuming. Not a day goes by that I do not think about her and pray that she's nourishing herself. Not a night goes by that I donut pray for her to awaken in the morning. And not a morning arises that I do not dread the fact that she might not have made it through the night. Then the next day is here. Will she wake up on time for school or be too malnourished to get out of bed? Will she get through the day without falling asleep in class? Will she always be alert and focused enough when she's behind the wheel?
She's already lost so many of her young years, shat is next? This beautiful, extremely bright, artistically and athletically talented child is not longer. She is still beautiful, but always pale and many times ill looking. She's still extremely bright, yet cant always see things clearly. She has a distorted perception of conversations and circumstances. Where are her friends and her fun she has become a cocoon over the years so she wont have to fact those who do not understand. This once enormously talented soccer goalkeeper who played at the very top levels for years has lost her focus, her agility, her quickness. Instead of worrying if shell stop a goal, she now has to worry will she break and bone or go into cardiac arrest. Yet, she has persevered. Though she is still a long, long way from recovery, she is headed in the right direction and beginning to gain back a life worth living.
Five years of therapy and hospitalizations have taken its toll on us all. Many days we feel that we work just to pay the medical bills. Besides therapy and hospital bills, there are weekly visits to the physician for blood work and weighing, there are lab bills and medications. And there are the losses which no amount of money will change. The last minute canceled family vacations because she has been too ill to go. The trips back and forth to Philadelphia to attend family therapy sessions when she was a patient at Renfrew Center. The lost days of work to be able to attend these appointments. - My son telling my husband and myself that he can go to a less expensive college so we can afford to help his sister.
And, Melissa's sacrifices too. She was not able to attend the college of her choice as we could not longer afford to send her there. The money once saved for her education has gone to pay for medical attention for her, and to the insurance company. Though I feel she is in a good place educationally, I can't help but think what might have been if my health care provider had actually agreed to provide the coverage in my policy. Though entitled to 60 days inpatient, I have had to fight kicking and screaming for one measly night. Most of Melissa's treatment team does not accept insurance of any kind. Is it any wonder? Those that once had have dropped it. Why don't I send her to a provider you may ask. Well, she has the right to have the best and the best I could find are non providers. Why not send her to a hospital of therapy rather than an eating disorder treatment center? Because I have and the personnel are uncaring robots; the treatment is punitive. I don't want my child punished, I want her helped.
In the summer of 1999 Melissa spent 5 1/2 weeks at Renfrew Center in Philadelphia; a nurturing, nourishing facility with intense therapeutic classes and sessions. CareFirst allowed one day of inpatient treatment and six days of outpatient. That meant that for those six outpatient days I was still paying for her to stay 24 hours as it was too far for her to commute. This led me to take my fight to the Maryland Insurance Commissioner and the Attorney General's office. The Ins. Commission found in Melissa's favor for 28 days outpatient. The insurance company appealed this finding. A hearing too place on February 14, 2000 and a decision was handed down on August 17, 2000 - more than a years post treatment. Though it sounds like a victory, insurance can continue to appeal through the circuit court. Will I ever recoup that money, more than $9000? It would be wonderful to collect but where is the real victory if the mental health coverage for eating disorders is not changed. Who are these doctors that review a stack and papers and decide what is best for someone they truly know nothing about. What are the options? Does insurance say 'no, we will not cover inpatient but we will cover this or that?' You are left to your own devices as insurance offers no alternatives although you possibly have coverage for such. I am standing before you to day to ask for help. Please understand that as debilitating as an eating disorder is, the cost of losing your life or even the quality of your life because your insurance company says "no" is reprehensible.
I thank you for taking the time to hear my story and that my family and our struggles.
Fighting for Treatment, Fighting for Life: An Anorexic's Story
Donna Thompson, Person suffering from anorexia
I've come here today to share with you my story. I am an anorexic. My name is Donna and I've been anorexic since the age of 15…I am now 34. My name really isn't all that important for I could represent any number of young woman (and men) out there suffering the consequences of an eating disorder. We are all suffering and we are all, quite literally, in a fight for our lives.
For the most part, our stories, by nature, are quite similar. We want treatment. We want to regain control of our lives. We want to be healthy…something that isn't possible when you're in the throes of an eating disorder…your health is affected slowly at first, but as the years go by your health and body hit a point where they begin to deteriorate rapidly…such as is the case with me. I can personally say the life of an anorexic isn't fun, it isn't glamorous, and it certainly doesn't live up to the Hollywood ideal of being "perfect." Being anorexic means never being perfect, never being good enough…it's a constant quest for an ultimate goal that is, in reality, unachievable.
Living life as an anorexic isn't about feeling good and isn't about being the envy of others for being able to stay so thin and in control. It isn't about being stuck-up or wealthy or whatever the message is that Hollywood and society portray it to be. I truly believe these false ideals and the association of anorexia to some of Hollywood's most beautiful actresses are what make it so alluring and appealing to so many. But the reality is, anorexia is not attractive and it is not a transient self-centered phase-it is a disease and a fatal one if not treated. The good news is that it is treatable, however many lives are lost each year because that treatment is not an option.
The premise of my story is just that, unobtainable treatment. I will spare you all the minute details of my daily struggles with the anorexia because that would be a whole other speech in itself. Being anorexic is like living in a nightmare that you never wake up from…it's with you 24-hours a day. It's hard for me to know that treatment is available and that there are people who can help me overcome this horrendous illness…however, the insurance companies have denied and continue to deny me that treatment. It's difficult for me to accept that, at least from what I've seen and heard, that only the individuals with monetary means will be the ones who have the best shot at recovery from anorexia; for those of us who rely solely on insurance for treatment or reimbursement…well, our chances don't look too good.
Throughout the years I've had Aetna, Trustmark, and currently, CareFirst BlueCross BlueShield. The policy for these insurance companies is to allow 20 mental health visits per calendar year. This year with BlueCross BlueShield, my 20 visits were used by March…these visits included both my therapy and medical visits for the anorexia. Even with the 20 visits BlueCross BlueShield will only reimburse at 50%. If you add up my therapy visits for this year, I will pay $8,075 out of pocket…the insurance will pay $850.
This lack of sufficient insurance coverage through the years has left me heavily in debt. Since 1993, I have been hospitalized numerous times and have been in and out of treatment centers.
In 1996 I made the decision to go to the Monte Nido Treatment Center in California. I made this decision because the anorexia had gotten worse and past treatments had been unsuccessful-largely due to inappropriate and/or limited treatment as a result of insurance restrictions. I chose to go to the Monte Nido Treatment Center because the woman who owns and operates it, Carolyn Costin, is a former anorexic herself and truly knows how to treat and help patients recover from eating disorders and I knew by this time that I needed serious help. My insurance at the time was Aetna. They refused to pay any portion of this treatment. Their reason was that they would not cover any type of residential treatment facility…no questions asked. My pleas and appeals were denied. I stayed at Monte Nido as long as my finances would allow. I used all my savings, took loans against my 401K plan, maxed out three credit cards with limits of thousands of dollars, my employer at the time contributed a few thousand dollars, and my sister took out a personal loan to help out as well. When all was said and done I was in debt about $60,000. That was 4 years ago, and today I am still paying on those loans and credit card debts.
Four years ago with the help of my therapist Sydnie Goldfarb, Carolyn Costin, and Monte Nido…I was the closest I've ever came to recovery and it was the healthiest I've ever been and felt in a long, long time. Had I been able to stay longer I believe I would be sitting here today telling you about my life as a former anorexic, but that is not the case. Being financially drained and $60,000 in debt, I came back to Virginia to live with my sister, who has allowed me to live with her for the past 4 years rent free. She has given me a place to live and a means by which I can continue my journey toward recovery. Had my sister not taken me in, I can honestly tell you I don't know where I'd be today. Mostly likely I would be dead by now, either from the anorexia or by my own hands. I would have been just another statistic…a nameless, faceless victim lost to anorexia.
Since 1996 after leaving Monte Nido, my health has continued to deteriorate. The anorexia is now worse than ever before and I have been hospitalized numerous times because of it. In most instances, even for medical hospitalization, my insurance would only pay at 80%. This only added and continues to add to my already substantial amount of debt. Dr. Melanie Blank is my medical doctor and I cannot even begin to tell you how many times she has saved my life. I've come close to death a number of times…and am only still alive today because of her. Dr. Blank continues to admit me to the hospital periodically for refeeding…and to save my life. She quite literally is buying me time until I can find a way to beat the anorexia.
Dr. Blank continually fights with my insurance company trying to relay to them the seriousness of my illness. In one instance in 1998, Trustmark denied hospital admission, Dr. Blank, my employer, and I appealed but Trustmark still refused. The appeal went on for 6 months until I finally landed myself in the emergency room. This was followed by a 3-week stay in the hospital for refeeding…at the time I weighed 68 lbs.
In July of this year I was rushed to the emergency room for what we feared was heart failure and just 2 weeks ago I was hospitalized again for refeeding. I don't know how or why, but through the grace of God I am still alive today.
Because the anorexia has gone on for so long (19 years), I now have osteoporosis, heart trouble, back and joint pain, dizzy spells, blurred vision, difficultly concentrating, and suffer from frequent exhaustion. Every day is a struggle and every day is a fight to want to stay alive.
I've appealed to BlueCross BlueShield to extend my mental health coverage but they have denied all requests and claims. I have requested they review my case on an individual basis on the grounds that anorexia nervous is both a mental and medical condition and a legitimate disease…but they still refuse to extend any type of coverage.
Currently, I'm working with my therapist, Trisha Souders, to fight this illness. I'm still in contact with Sydnie Goldfarb and Carolyn Costin, and I see Dr. Blank at least once a week. If not for the efforts of these extraordinary people and my wonderful friends, I know for a fact I would not be alive today.
Anorexia is a serious illness. Although it may start out innocently enough, once it has you in it's grip, it's got you…until it kills you or you find a way to break free. In my case, even if I were to break free from this illness right now, the debt I've accumulated will continue to be a heavy burden that will affect my life for many, many years to come.
But breaking free is why I'm here today. The road to recovery is long, winding, and difficult at best. It's a complex illness and a difficult one for almost anyone to comprehend or even begin to understand…but it is a disease. One that is claiming it's victims at younger and younger ages and in greater numbers each year.
My hope here today is that you can make a difference and help save lives. To help save lives and at the same time not destroy them financially. Treatment is available and recovery is possible. Without the means to fight, the majority of anorexia's victims will loose the battle. They will become just another casualty in a war nobody seems to be taking seriously. I know that I will mostly likely not survive this illness. I will most likely not be alive this time next year or even 6 months from now. For now though, I can be a voice for those who have died before me…and a voice for those now living through it…please help us in the fight for treatment…please help us in the fight for our lives!!